mE

I am a 27 year old social worker and doctoral student working on improving my fitness. This blogs is a place for me to write about my experiences with fitness and fitness communities as a fat , feminist woman with disabilities. Sometimes things might go off the topic of fitness but that is the general theme.

Posts Tagged ‘Spoons’

I wrote this last night but then wasn’t sure about posting it or not. I’ve been debating if I should post this or not. But I kind of think it’s an important post in the way of recognizing what low spoon days can look like. For me, my “spoons” or what can I manage, will vary day to day. Some days are better and those are the days I work, get school stuff done, workout, et cetera. And it’s easier to talk about those times, and the struggles I have during those times. It’s hard to talk about the bad days. The days I get nothing or almost done and little acts leave me crumpled on the floor in tears from exhaustion and pain. I still struggle with feeling embarrassed and ashamed of these days. Internalizing the message that this is a reflection on me as a person, the idea that if I was a better person I would be strong enough to overcome it. Even though I know logically that is not how this works.

I really wanted some mashed potatoes for dinner today, and did end up making them, but it took all day to accomplish.

A run down of my day:

Woke up late in the afternoon (spent most of my weekend just sleeping. After work Friday I came home and slept for 24 hours straight. I’ve been completely exhausted.)

I was awake but still incredibly exhausted, and so dizzy I couldn’t stand for awhile.

After a bit I started feeling better- better enough to take a shower. So I decided I would try to go to the grocery store to get some food. Which meant first taking a shower.

After the shower I needed to sit and rest a bit before getting dressed to leave. After a bit of rest I got dressed in jeans, a tank top, a zip up hoodie, and slip on shoes- a very simple outfit that didn’t cost many spoons. Then I headed out to the grocery store.

I managed to get to the store just before closing to get some groceries.

Came home, brought my groceries into my house, and then immediately collapsed in a pile of grocery bags right at my front door where I lied crying, completely drained, in pain, and frustrated that something as simple as going shopping for some groceries left me so completely drained.

Rested there a little bit before I was able to get up and put away groceries.

Ate some raw veggies while resting more.

After awhile I was able to get up and put food on the stove and in the oven to cook.

Then rested while it cooked.

After awhile I had cooked potatoes, peas, and some turkey. A very good dinner.

That was around about 2am. Finally, by 2 am, I had dinner.

And that’s basically all I managed to accomplish today (well, that and managing to get some programs reinstalled on my computer because on top of my body not working, my computer is giving me shit too).

Welcome to a day in my life.

Thought I would post this because it reminds me of the things people often take for granted, like being to go grocery shopping or cook dinner and not have that take up all your energy for a day. To have that be just one small part of the day.

And now I am off to bed, hoping I have more spoons tomorrow because I obviously wouldn’t have been able to manage a full day of work on what I had available this weekend.

I’m not sure how I feel about the way spoon theory has been expanded to others sorts of disabilities- as I’ve seen the types of spoons used with. It does strike me in some sense as being a very different issue that distorts the language we use when people apply the same language of spoons to things that are actually quite different, but then at the same time, I kind of feel like if it helps explain disability maybe expanding the meaning helps….

I am torn though lol, because as soon as I type that I think “but sometimes it obfuscates the issue”.

But that issue aside… I really could relate so much to the author’s annoyance at a friend who found that sex is the key to getting more spoons. Not specific to sex, but I have definitely had trouble with people understanding that spoons is not something limited to “difficult” activities, or chores- relaxing, fun activities take spoons too. I actually had been thinking to blog about this for awhile and just struggled with how to phrase my issues.

But I have recently run into people who seem to think that “fun”, “relaxing” activities don’t count for spoons for me, they should recharge me, they should help me with my stress not add to it. Which in terms of stress- yes, relaxing activities and seeing friends can help. But spoons isn’t code for stress, my disabilities are not code for stress. It’s not about stress. Spoons are about the energy needed for things, and that includes watching netflix on my couch.

“Just for fun/To relax” activities also, in my experience, cost more than healthy people realize, too. It’s often not just the activity itself that costs spoons but the spoons to be presentable for it- showering, putting on clean clothes, bushing my hair. I feel like people often forget the true meaning of spoon theory- which is in large part how healthy folks take these things for granted. When Christine Miserandino’s friend starts her day by “getting ready for work” Christine has to correct her- getting ready for work is not one thing, you don’t get up and get ready with a chronic illness, as she puts it:

It looks a bit different for me and probably different for many different spoonies, but there are similarities. I often wake up late, I slept through my first 3 alarms again because when I push myself too hard alarms will not wake me up, I am already exhausted and my whole body hurts but I have to force myself out of bed, then I have to shower but I have to actually plan out what I can do in the shower day to day… shaving is usually too costly for me. I do that once in a blue moon, usually on a weekend, when I’m feeling well. What I wear is based on spoons available as well. Make up and doing anything special for my hair costs more spoons and yet there is an irony that many people, women in particular, with chronic illnesses tend to wear makeup and spend more time on our hair than healthy people, because makeup and hair products and styles are camouflage for us. When things are the worst for me health-wise, wearing make up does not feel like an option. I’ve learned some tricks to try to lessen the appearance of the thinning in my hair. I wear makeup to cover up under eye bags and petechiae from vomiting, so that I look healthy. So that I’m not constantly being told how tired and sick I look or being asked what’s wrong all day.

Luckily my morning medicines do not need to be taken with food so I get to skip on breakfast in the mornings. Thankful for that.

But this is what it means to have to think about “spoons”. Healthy people don’t have unlimited energy. Healthy people can’t do everything they want or need to in a day all the time. There is limited time and energy for work, volunteering, taking care of kids, working out, spending time on hobbies, and keeping up with your chores. That’s normal. Spoon theory isn’t about managing all those activities, though they are part of it too, but it’s about all the little things that healthy people don’t have to plan out and factor into their energy reserves for the day. Healthy people have to plan out how they will manage and fit those obligations and wants, spoonies have to manage that and also make careful decisions about things like showering, dressing, what clothes we can or can’t wear that day, managing medications (I always feel an irony in needing to budget out the spoon needed for medication set up each week…. but if I come up short and don’t have it I will be screwed because I won’t have my meds ready to take for the week). It’s also about the fact that some days we have so few spoons those small things are the only things healthy people take for granted are all we can manage.

So after my last post I started thinking about Spoon Theory, I remember reading briefly awhile back that there is a lot of debate about whether or not Spoon Theory can/should be used in terms of mental illness. My thought was (and I guess still is) that if someone has any form of chronic illness (be it physical or mental) and feels like spoon theory accurately describes their experiences with the chronic illness, then why not? On the other hand though, I hadn’t actually seen any arguments made supporting either side.

So I did a little bit of googling. Didn’t really find what I was looking for, but I found a few blog posts talking about variations people have proposed for spoon theory, which relate to other types of illnesses.

Fork Theory

The first I read was a blog post about a proposed Fork Theory. This seems to be applied mostly to mental illness. To get a good idea of it, you should probably read their whole post, but I will try to summarize it as I understand it. Essentially it’s an analogy for what people with a chronic illness have to ‘pay’ for a certain activities, balanced with the reward we get for those activities. Spoon theory was meant to illustrate and symbolize having a chronic illness how you have to really think about the energy you are spending on every little thing you do, that people who are generally healthy do not have to think about. Fork theory is sort of the same idea but whereas spoon theory, each day you have a number of spoons, and there isn’t anything you can do to get more spoons* for that day. Whereas with forks you have to spend a certain number of forks, but you can get forks by doing things. So it costs 2 forks to take a shower, but taking a shower gives you 5 forks. Which is a great deal, unless you don’t have 2 forks to spend. But also that you don’t always know for certain how many, if any, forks you will get from an activity. So it’s also a bit of a gamble.

*other than possibly borrow from tomorrow, but only at the expense of tomorrow having less, and not knowing for sure how many spoons tomorrow will even have to begin with. Which to use my last post as an example of this, maybe I could have gotten in a workout despite how I was feeling by borrowing spoons from today, but the consequence of that might be- and probably would have been- that I do not have enough spoons to do anything meaningful today. Which as I think about borrowing might be the wrong way to describe it. Because for me, a lot of the time I get fewer “borrowed” spoons for that day than the spoons lost the next day for it.

Fork theory makes sense to me, I’ve definitely felt that way. Taking a shower will make me feel better but I don’t have the energy to take a shower. I also know the gamble bit, particularly with depression. Talking to someone can help make my depression better… or could actually make it worse depending.

Interestingly though, I started thinking about how the fork concept can apply to things like my physical energy and abilities. I thought about this while I was making lunch, which is probably what made me think about it. I had the spoons today to make a pretty good lunch (imo). There are days I don’t have the spoons for that though. Or I have the spoons to cook but not cook and do dishes, but I haven’t had the spoons to do dishes in days so I have no clean dishes to prepare or eat food from. But on the other hand, obviously eating healthier is better for me in the long run. Unlike the examples used for forks though, the benefit is often not immediate. I won’t get more spoons for today from eating well. But eating better can pay off in more spoons per day long term, or fewer spoons per day if I don’t eat well. Same can go for exercise. To an extreme, the same goes for medications. It takes time and spoons (well, maybe more like 1 spoon) to set up my pills for the week. But if I don’t even have that spoon to spend on it, and it doesn’t get done and I’m all out of set up pills, I probably end up not taking my medication, and I will end up pay heavily for that.

Types of Spoons

Following a link from the forks blog, I found a blog post about different types of spoons. The idea behind this is that not all spoons are the same, but can be specific to types of activities. Though to me it would make more sense to talk about it in terms of general cutlery (though it would conflict with fork theory were forks don’t work exactly like spoons) rather than types of spoons. Wouldn’t the analogy fit real life objects better if instead of spoons for different things in your drawer, you had spoons, forks, butter knives, steak knives, et cetera. And similar to preparing/eating different foods, different activities require different cutlery?

But aside from that, this does not hold true to me in terms of spoons as an analogy for energy/ability with chronic illness. I don’t feel like I have activity specific spoons, just general spoons and different activities cost more than others. It’s not time based of course, an hour of one activity will not have the same cost as an hour of another activity, but they all use the same spoons in general.

Of course I don’t have asperger’s/autism so of course my experience is different than that writer. Which does make me wonder though, back to the original question- how far does it make sense to apply spoon theory? How much sense does make to apply it across all forms of chronic illness or disability? Spoon theory started simply as one woman’s way of trying to tangibly explain life with Lupus to her friend. Turns out the concept applies to a lot of other physical disabilities/chronic illnesses as well, though it won’t apply to all. Or at least, won’t apply to same to all. And obviously there are differences between physical illness and mental illness and autism. Does it really make sense to use the same analogy to try to explain all these experiences despite significant differences? (I certainly have no answer to that right now)

I started out writing just about how frustrated I feel about the fact that as much as I need and want to find a job, in many ways being unemployed allows me to feel like a “normal” person. I feel like a normal person when I have the spoons to do simple things like keep up with my dishes, and laundry. I’ve even been able to paint a room in my house, and furniture for that room, and get close to getting that room set up (hopefully once I do, I can move on to another room, since that is one room out of 6 (2 bedroom house, with living room, dining room, kitchen, and bathroom).

I have the spoons to exercise and even have been able to spend some time on other hobbies like knitting, crochet, and drawing.

But as I think about this and ways it frustrates me, I realize that part of it is that my chronic illnesses are even more invisible because of the fact that managing spoons can’t always be seen. Saying invisible disability mainly means that if you look at me, there are no obvious physical indicators of disability/chronic illness. But it can also be invisible in terms of behavior as well as just physical appearance. Because when I do something that is just typical for healthy able-bodied folks, but it takes all my spoons to do it, they don’t see that. They just see me doing the same things as them, without seeing the consequences after of having no more spoons left. For example, with work, coworkers could see me at work all day, able to do that. They don’t see when I get home all out of spoons and just crash, where even basic things like cooking dinner are off the table let alone anything that would require far more effort (spoons). Or even like having a fun outing day now and then with friends, I can looks “normal” (healthy, able bodied) in my ability to do that, but they don’t see the next day when I’m too sick to get out of bed all day because of it where they day after is just another day for them. Of course there is also the part that if you see me, it’s probably a good day. Or at least average day. Maybe just a not terrible day. But on bad days, you won’t see me. I’ll be too ill to leave home or I’ll be in the hospital. But it’s normal that people only see the good days, and then extrapolate from what they consider normal and assume the rest of your time looks like that.

I saw this article, about how to deal with people who don’t believe you are sick, on my facebook feed and I clicked it excited to read it and expecting to really like it. But I was rather disappointed in the parts of this article that focus on educating people about your illness, I’m not saying the author’s advice can’t be effective, but the suggestion that this is how we should respond bothers me.

This is certainly not how I approach talking about my illnesses. Let me start with a little story: After the last day of class for one of my classes last semester, me and my classmates went out for some drinks and pizza at a local brewery to celebrate being done with the class and just chat a bit. During the conversation I made a comment about how my health had been worse this semester and I missed more classes that semester (in my other two classes) than I have at any previous point as a graduate student. My classmates who are active on facebook know I have health problems because I complain a lot on facebook about it. My classmates who aren’t on active on facebook wouldn’t necessarily because I don’t talk about it hardly ever in person. It’s one of those topics that’s just easier for me to type about on a computer screen than talk about in person. For a number of reasons I just don’t like talking about my illnesses in person. I made a comment about how I feel like I’m always just complaining about being sick, and one of my classmates remarked on this- how I basically never mention it in person.

So with that little background about me, let’s talk about some reason that I, and I’m sure other, people with chronic illnesses won’t be education you about them as suggested in this article.

Not Everyone with Chronic Illnesses Has a Diagnosis

It is really hard to educate people about your illnesses if you don’t know what they are and have no name for them. If you spend any time following groups where people talk about chronic illnesses then you will probably see people talk about the struggles with getting a proper diagnosis, and the relief when we have a name for what we are experiencing, even if it doesn’t result in any “cure”. One of the most frustrating things for me dealing with chronic illnesses is all the times doctors have done some test that came up negative and they put on some big smile and tell me nothing is wrong, like I’m supposed to be comforted by that. That’s not a comfort, it’s a frustration, and it makes me want to slap that stupid smile off your face. Because when I know something is wrong, what you are actually telling me isn’t that there is nothing wrong, your just telling me that you still have no idea what is wrong- because regardless of the test results, I know something is. And obviously symptoms don’t wait for a formal diagnosis to show (duh), so those who are still in the process of trying to get an accurate diagnosis have just as many if not more problems as a result of their undiagnosed illness- often more since a lack of diagnosis makes treatment harder. The times my meniere’s disease was the worst and the most disabling for me was before I had a diagnosis. I got severe vertigo from time to time that made it difficult to impossible to do things and came without warning, but I had no clue why for about 4 years.

I’m still sort of in this place regarding my fatigue and (non-migraine) pain issues. I’ve gone through numerous diagnoses that ended up not being accurate. I don’t like talking about this in part because I still don’t feel I have a real diagnosis to talk about in regards to it. Although I do have a “what doctors currently think it is”, I have no confidence this diagnosis will stick nor confidence that it’s really accurate. That makes it harder to talk about and hard to educate people about.

It’s Private Medical Information

Honestly, a big issue for me is also that I consider my medical information to be a fairly private matter. If you aren’t my doctor, I’m not going to have an attitude of “ask me anything you want about it!” Obviously people close to me usually know I have chronic illnesses, but I don’t go into detail about them with people usually, I’m not really an open book about it, and I don’t feel I should have to be. I suspect most able-bodied people would find it odd if I started asking details about their medical histories that they are used to only sharing with a doctor. I mean, hey, if the topic comes up, people are likely to ask questions, that’s life, if a friend of mine brings up her cholesterol from a recent doctor visit, I am likely to ask follow up questions for more info. And if she says she isn’t comfortable answering, that’s fine. Just the same I don’t get angry at people asking questions I open the door to, and I will either answer or say I’m not comfortable based on how comfortable I am with the question, and that should be fine too. I just don’t think I automatically owe people any and all information relating to my illnesses.

Also, sometimes chronic illnesses deal with things we aren’t comfortable talking about. Talking about my migraines isn’t really embarrassing or anything for me. When I had bleeding in my digestive track that lead to me being severely anemic from the blood loss, that resulted in me ending up in the ER and having to take quite a bit of time off work because I couldn’t even walk across the room without experiencing pretty intense tachycardia (a result of anemia because my heart was attempting to pump the lower blood volume faster to keep up with the oxygen demand from muscles throughout my body). I mean, talking about being anemic isn’t embarrassing, but talking about where the blood loss was coming from and the testing that was involved in that, kind of was… kind of still is. There are a lot of aspects to our health that most people find uncomfortable to talk about.

We Don’t Always Want Advice

One reason we may not talk about it is because when you open that door, people want to start offering advice, and we don’t want to deal with those responses again and again. So it’s easier to just not talk about it in the first place. This may be less common for the author who has a rare disorder most people have never heard of. It’s a bit different I think when your invisible illness is something people have heard of. For example, I don’t think I’ve ever gotten unsolicited advice about my meniere’s disease, if I have I’m blanking on it. But when I say meniere’s, the majority of people have never heard of that before. So there is a lot less “ya know I read online that x helps, have you tried that?”, or “My friend’s sister in law has that and she says x is the best, have you tried that?” By contrast mentioning migraines is far more likely to result in advice on it. Especially since it’s not just something that people have heard of, it’s something people misunderstand the meaning of. So many people think a migraine is just a bad headache, so they apply what works for them when they have a bad headache to chronic migraine sufferers. One piece of advice I’ve gotten numerous times is “have you tried exedrin migraine? That’s supposed to be really good!” No! I’ve had chronic migraines for 18 years and tried, I don’t even remember how many, prescriptions drugs in addition to over the counter medications, and herbal supplements, but I have never tried a very common over the counter medication with “migraine” in the name of it. I get a lot of advice about fatigue too, like “have you tried caffeine pills?” or “you just need to make sure you get at least 7 hours of sleep a night!” (that last one will really make me stabby fyi. I fucking wish just 7 hours of sleep got rid of all my fatigue problems) because that’s another thing people think they understand when they don’t.

Chronic Illnesses are Frustrating!

This is the biggest reason I don’t like talking about my chronic illnesses with people is because living with them is frustrating! And talking about all the frustrating aspects of it makes me revisit that frustration and I hate having to do that. I don’t want to have to think about how frustrating it is any more than I already have to.

And educating about it can be frustrating when the effects are complicated and varying. Like trying to explain symptoms that can come up but usually don’t. Like how a common illness (like catching a cold) interacts with your chronic illness. So I have to explain not just my chronic illness but then the ways it interacts with a variety of other temporary ones. Or when one illnesses causes another. I feel like my health is very much a dominos issue. There are so many side issues that are caused either by one of my “primary” illnesses directly, or caused by a medication that was or is being used to treat one of those! For example I have kidney damage and am prone to developing kidney stones from a side effect of my meniere’s medication. Add in that even if some of the issues are diagnoses, maybe there is something new that has happened or sometimes happens that may or may not be related to one of the diagnosed issues… Like when I had that bleeding problem it wasn’t clear the cause or if the cause was related to one of my already diagnosed issues. And how illnesses present can change too! For example, I’ve started having migraine symptoms that I didn’t have 18 years ago when they first started, which I’m told by my neurologist is relatively normal to happen.

Denial

This is maybe not a good reason, but to be totally honest, this is one reason I don’t like talking about it. Because a lot of the time I like to try to deny to myself even the full effects of my health issues. I’m not sure how common this is for people with chronic illnesses though I suspect it’s probably more common for people who develop them later in life and haven’t always been used to dealing with the consequences. I know that is a factor for me. Although I’ve had chronic migraines for 18 years, alone for most of that time they were not that big of an interference for me. Chronic Illnesses haven’t been a big problem for me until starting about 7 years ago or so. That not so long ago. It’s a recent enough problem that I still remember very well what life felt like without these issues. And there are a lot of times I just want that back so much I try to convince myself that I can have it if I just pretend I’m not sick. That obviously doesn’t actually work but regardless of how wrong and illogical it is, and not really a great coping mechanism, it’s still a factor.

I Don’t Like to Complain

If you only know me through facebook, you probably wouldn’t think this. One of the reasons I feel more comfortable talking about it and complaining about it on facebook is that people can either scroll right past my whiny posts, and/or adjust what posts of mine, if any, show up on their feed. If I’m talking to you one and one in person, you kind of have to listen to me when I start complaining and I just don’t want everything I talk about to be talking about the difficulties caused by my illnesses.

For people with chronic illnesses who want to work on educating people about their illnesses, that’s great. But for people who don’t have chronic illnesses, don’t expect that everyone you encounter with one will or should invite you to lunch to talk about it and tell you to feel free to ask any questions you have about it.

(And in fairness to the article, it still has some good advice not related to educating others, like setting boundaries, not feeling guilty when you have to prioritize taking care of yourself, and finding a support group.)

Let’s just start straight off with what got me annoyed at this mentality this time around. Someone posted online that they were upset they wouldn’t get to workout that day because they were working a 12 hour shift. And I get that frustration. I hate when I really want to workout, but other things get in the way- thankfully I’m not doing 12-16 hour days between work and school anymore. Still there are times when I have a paper I need to work on and I just can’t afford to take time away from that to work out. It happens. It’s life.

Except the responses to this person saying that were all “I work 12 hour shifts and still work out everyday! No excuses!”

I don’t know the person who said this, I don’t know their life or abilities, but it pisses me off when people assume that all people have the same capabilities for all things.

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day.

I know this feeling so well. I still have to battle my own denial, where I want to think I can do all the things and just ignore my limitations, but I can’t. I literally can’t.

And as described there, the same s true for me- there are good days and there are bad days. I think pretty much everyone with a chronic illness has that. Some days I really can’t even function at all. And some days I actually feel pretty normal.

But I still get frustrated that I can’t just do things like healthy people. Things have to be different for me, and nothing is ever as predictable.

I’ve gotten a lot better at working out regularly since I’m not working currently, instead focusing on school. It means I have more spoons that aren’t being used for work that I can allocate some toward work outs instead.

I am just really sick though of this mentality that all people have the same capabilities at all times. Even if you take two people with the same illness they are not going to have the exact same experiences with and problems from. Heck, remember that good days and bad days part? That means you can take the same person and they will not have the same experience and problems with an illness on different days.

And this is the kind of crap that pisses me off about the “no excuses” line that is always thrown around on fitness sites.

And as if dealing with chronic illnesses doesn’t make me feel different and shitty enough, I can’t even express frustration about them keeping me from a workout without someone who doesn’t have to deal with these issues coming along to tell me how they still get in their workout no matter what, so I have no excuse for not ether.

Which btw, my illnesses aren’t excuses, they are just shitty facts of life for me that I have to deal with.